Tuesday, March 8, 2011

Promises

It's 10:30pm and I just stepped off the treadmill. I promised myself 4 miles today -- a promise I thought I'd lead off the day with at 5:30 this morning. Today, however, life had other plans. Namely a two year old who screamed inexplicably for most of the early morning hours. Regardless, no one is crying now and all of the day's promises have been kept.

Indeed, wonderful promises have managed to find their way into our lives over the past few months.

My Ty-guy turned 8. EIGHT! We did it up right with a party at the Lion House in Salt Lake with a few of his buddies. They played pioneer games, made their own taffy and wore coonskin hats throughout the entire shin-dig. Heaven.

The actual birth-day soon followed the party weekend and Ty awoke to his first concert ticket to see his favorite band - Bon Jovi. (Lucky for us, no?)

Brothers joined in the gift-wrapped excitement of that evening's family festivities. (It's a rare, fleeting and wonderful thing to see these two get excited for each other :) Ah, brotherly love. Let's hope we can all survive it.)

In our faith, turning eight also means reaching the age of baptism.

More mugshot than portrait, I think every good Mormon kid has a photo like this one so I had to include it in the remains of the day. As with the less than stellar family photo below-- Preston was none to excited to be having ANOTHER day focused on his big bro. Three parties in one month is great for the birthday boy, not so great for the little brother. The baptism ceremony was the straw that broke the camel's "what about me" little back. Luckily, his birthday followed soon after.

Baptism day was celebrated with another perfect cake from Aunt Hilary and Uncle Ron. Seriously great cake--inside and out.

As part of Ty's first real right of passage, he also received his first suit. A gift I was unsure would excite him until we took him for his fitting. The three-way mirror and Dave Matthew Band dressing room tunes was a combination that unleashed an inner fashionista. He was so pleased with the way he looked, the tailor could barely get him to stop shaking his money maker long enough to mark the cuffs. I was smiling so hard my face hurt. Good, good day.

So to the little man who made me a mother, please know that watching you grow up makes my own aging worth it. You make me more proud with every day. Thanks for being our unending chatterbox, idea machine, third parent, and heart of gold.

Now, for Preston. The count down to Preston's birthday usually begins immediately following Christmas. And he is eerily accurate with his numbers right up to the day of celebration.

This year, our six year old magic man enjoyed an afternoon of tricks and surprises all his own.

A real magician, live animals, 15 friends, candy, candy, candy, and a house full of adoring grandparents, aunts and uncles. What more could a kid want?

Well, maybe to lose his first tooth. FINALLY! Although the newness of the moment has him looking a little nervous in the picture below, he was thrilled.

Life continues to be good here. Our kind of good, but good. We are still trying to figure out and understand our silent Mac, but there have been a few breakthroughs --

He now grabs at our hands with authority and leads us to the place or object of desire. HUGE improvement over what seemed like random tantrums. At least now we know the vicinity of his want or need and we've become pretty great guessers.

He has also started to sign a very little bit. The routine goes something like this: After leading me to the refrigerator and forcefully placing my hand on the handle, I say "Open?" and he returns the question with a look of "Duh!" and I open the door. He then giggles, shimmies his way into the fridge and starts pumping his little fists open and closed, making the sign for milk. It's really the only thing he drinks these days so we know what he wants when we land outside the refrigerator door, but progress is progress. And I'm taking out my chalk and marking this little sign as point one for the good guys.

Many of our heart friends are gearing up for Fontans in the coming months. Much love to all of you sweet babes and the brave moms and dads who will see them through. I sometimes marvel at the fact that the Fontan hurdle is behind us now.

We received a surprising 7:00am phone call from CHOP earlier this week, the hospital where McKay had his Fontan last July. Nothing good is on the line when the phone rings that early. Someone is hurt or the carpool is about to fall apart. My intuition was right -- It was a researcher hell bent on convincing us to come back to CHOP for an all-expense paid poke, prod and MRI visit. They are studying blood flow in the brain of single ventricle kids pre- and post- Fontan. While we signed up for three research opportunities during our stay, we considered but decided against this particular study for the extra sedation, needles and radiology required to participate. Weave your needs into a regularly-scheduled procedure, sure. But require a separate event to participate? No thanks.

I'm not sure if that makes us bad citizens of the heart community, but it took us all of about 15 minutes to reconsider the request and thoughtfully decline, again. We're just not ready to go back to Philly just yet. Instead, we need to be home. Home to have a normal summer of sprinklers and popsicles and mastering two wheels. It's coming, I can feel it. It's snow today, but it will be sunshine tomorrow. Baseball tryouts are Saturday; bring on the boys of summer.

6 comments:

I always love to see an update from you guys. Congrats to big brothers on some big milestones...those cakes look incredible! Yum! I thought about you guys when they announced that the new senior CT surgeon at PCMC was from CHOP. I wondered if you knew him and if that might help make it easier for McKay to stick close to home. Maybe Primary's will institute some similar programs so that you can participate in the research while it is part of a routine check. I am also glad to hear that McKay is doing his part to show you the general area of his desire. We are at that point as well... a few signs and a lot of pointing and grunting, but like you said... mom's are expert guessers! Thanks again for the update. We think of you all often!

So excited when I saw a new post from you. You are an amazing mom. Your boys are growing up so fast and they are are all so very handsome. It's fun to watch them grow up via the blog and to hear of McKay's triumphs. My lady, things seem happy in the 'castle of men'...carry on! Thank you for sharing your stories.

Live. Laugh. Love.

About McKay

Mr. McKay is a miracle. He was diagnosed with a soup of congenital heart defects while still in utero including: double inlet left ventricle (DILV), Transposition of the Great Arteries (TGA), a large ASD which has now been modified to create a single atrium, pulmonary atresia, and dextrocardia. He has undergone a series of three open heart surgeries to reroute his plumbing into a flow more likely to meet his growing body's demand for oxygen. He is post BT Shunt (August 22, 2008) and post-Glenn (November 25, 2008), and most recently traveled cross country to have the Fontan procedure at the Children's Hospital of Philadelphia (July 9, 2010). Today, McKay is a growing near-three-year old challenged with developmental hurdles we are anxiously trying to help him overcome. McKay offers heart baby hope of the most robust proportions. This blog chronicles our adventures.